In July last year (2010) I started getting some minor symptoms,
at the time though there was a bout of gastro going around my work so of course I just wrote it off as that. When everyone else started getting better and I didn’t, I had a feeling something was not quite right, next thing I knew I had lost five kilos…then another five… 12 kilos in total bringing me down to a very scary weight! I went to see my GP, she has been fantastic through all this, and she prescribed some blood tests testing for celiac and lactose intolerance and a stool sample. I was absolutely devastated at the time because I had always had such an appetite and such a passion for food, the thought of not being able to eat bread or pasta was terrifying (if only I knew what was to come!). A week or so later after a negative result on the tests, another doctor’s appointment I had lost all ability to get out of bed or stay awake for longer than a few minutes, my G P recommended I have a colonoscopy and an endoscopy so they could figure out what was wrong.
The day of my surgery I was diagnosed with ulcerative colitis and immediately started on prednisolone. By reading this website, I have been one of the lucky ones, the main side affects I had from this medication were a bit of hair loss and instead of depression there were a few days where I did feel abnormally elated, quite strange given the circumstances!! Since then I have been taken off prednisolone and am now on salofalk and imuran (was taking iron supplements too but have since gotten my iron levels back up to a normal range). Overall I am fairly healthy, and in comparison to some of the other stories I have been reading I feel absolutely terrible for feeling sorry for myself and my state, there are others who have this disease far worse than I have at the moment even though my specialist has told me I was one of his worse cases when I first came, my heart goes out to you, it really does.
Being diagnosed with a chronic illness is something which takes a bit of adjusting to, only know that I am better I am starting to realize what this means.
The hardest thing for me was that I have never really been sick in my life,
before this I had never taken any over-the-counter painkillers (such as pandol), antibiotics or anything, the sickest I have ever been would have lasted for less than a week before I would be back playing the sports I love. Assuming the sick role has been so difficult for me because I have always felt a sense of pride of how healthy I was, I did everything right, good diet, heaps of exercise, why should this happen to me?? Now when I think of myself I don’t see myself as I used to be, I see my disease. I hate what is happening to me and that I have no way of controlling it and I feel so guilty that only now am I starting to feel this way when everybody has praised me for the last few months on how well I am handling this, I feel like I am letting people down by feeling this way now.
The main reason I stumbled upon this site is that for the last week or so I have had quite severe joint pains, mainly in my back. Reading some other peoples posts, imuran seems to be the most likely cause for this (other than the disease itself), however I have been taking imuran for about 6 months with no previous problems. Truth is I am actually quite worried about my kidneys, as the pain seems to be in the right spot and I have also had a slight fever all week. I have had a blood test done this week, just my usual one which tests for everything under the sun. I really don’t want to go back to the doctor as after visiting him every week I was getting a little sick of him!! And he just told me that as long as my blood tests remain fine I don’t have to come back for 6 months!!
As a psychology student at university, one thing that did particularly bother me about the medical system here in Australia is that I was not referred to see a psychologist or a dietician (I know they say it’s not diet or stress related but realistically…how can it not be) or physiotherapist or any other allied health service. Managing a chronic illness, or any illness, involves a much more multi-disciplinary approach than purely the ‘fix the symptoms’ mentality of the medical profession. I was just wondering if any other countries the multi-faceted approach is utilized more than it is here?
I think that’s all for now! Feels good to finally get that off my chest.
-Daina in Australia
Medications: Salofalk (mesalazine): 4g/day, Imuran (azothiaprine): 100mg/day